Sorrel T Burden1, Debra J Jones2, Matthew Gittins1, Joanne Ablett3, Michael Taylor3, Christopher Mountford4, Jonathan Tyrrell-Price5, Clare Donnellan6, Fiona Leslie7, Tim Bowling8, Simon Gabe9, Farooq Rahman10, Stephen P McKenna11, Jeanette Wilburn12, Alice Heaney12, Philip Allan13, Simon Lal14. 1. School of Health Sciences, University of Manchester, M13 9PL, UK. 2. School of Health Sciences, University of Manchester, M13 9PL, UK. Electronic address: Debra.jones@manchester.ac.uk. 3. Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK. 4. Newcastle Upon Tyne Hospitals NHS Foundation Trust, UK. 5. University Hospitals Bristol NHS Foundation Trust, UK. 6. St James University Hospital, Leeds, UK. 7. University Hospitals North Midlands NHS Trust, UK. 8. Nottingham University Hospitals NHS Foundation Trust, UK. 9. St Marks Hospital, London Northwest Healthcare Trust, UK. 10. University College London Hospital NHS Foundation Trust, UK. 11. School of Health Sciences, University of Manchester, M13 9PL, UK; Galen Research Ltd, Manchester, UK. 12. Galen Research Ltd, Manchester, UK. 13. Oxford University Hospitals NHS Foundation Trust, UK. 14. School of Health Sciences, University of Manchester, M13 9PL, UK; Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK.
Abstract
BACKGROUND & AIMS: Home parenteral nutrition (HPN) provides life sustaining treatment for people with chronic intestinal failure. Individuals may require HPN for months or years and are dependent on regular intravenous infusions, usually 12-14 h overnight between 1 and 7 days each week. This regime can have adverse impact on the life of people dependent on the treatment. The aim of this study was to establish mean values for the Parenteral Nutrition Impact Questionnaire (PNIQ) and to determine the effect of disease, frequency of infusions per week and patient characteristics on quality of life of patients fed HPN. METHOD: The PNIQ was distributed to patients across nine UK HPN clinics. Data were analysed using linear regression, with PNIQ score as the dependent variable and potential confounders as independent variables. Unadjusted and adjusted models are presented. Higher PNIQ scores reflect poorer quality of life. RESULTS: Completed questionnaires were received from 466 people dependent on HPN. Mean PNIQ score was 11.04 (SD 5.79). A higher PNIQ score (effect size 0.52, CI 0.184 to 0.853) was recorded in those dependent on a higher frequency of HPN infusions per week. Respondents with cancer had a similar mean PNIQ score to those with inflammatory bowel disease (mean 10.82, SD 6.00 versus 11.04, SD 5.91). Those with surgical complications reported a poorer QoL (effect size 3.03, CI 0.642 to 5.418) and those with severe gastro-intestinal dysmotility reported a better QoL (effect size -3.03, CI -5.593 to -0.468), compared to other disease states. CONCLUSIONS: This large cohort study of quality of life in chronic intestinal failure demonstrates that HPN impacts individuals differently depending on their underlying disease. Furthermore, since the number of HPN infusions required per week is inversely related to an individual's needs-based quality of life, therapies that reduce PN burden should lead to an improvement in QoL.
BACKGROUND & AIMS: Home parenteral nutrition (HPN) provides life sustaining treatment for people with chronic intestinal failure. Individuals may require HPN for months or years and are dependent on regular intravenous infusions, usually 12-14 h overnight between 1 and 7 days each week. This regime can have adverse impact on the life of people dependent on the treatment. The aim of this study was to establish mean values for the Parenteral Nutrition Impact Questionnaire (PNIQ) and to determine the effect of disease, frequency of infusions per week and patient characteristics on quality of life of patients fed HPN. METHOD: The PNIQ was distributed to patients across nine UK HPN clinics. Data were analysed using linear regression, with PNIQ score as the dependent variable and potential confounders as independent variables. Unadjusted and adjusted models are presented. Higher PNIQ scores reflect poorer quality of life. RESULTS: Completed questionnaires were received from 466 people dependent on HPN. Mean PNIQ score was 11.04 (SD 5.79). A higher PNIQ score (effect size 0.52, CI 0.184 to 0.853) was recorded in those dependent on a higher frequency of HPN infusions per week. Respondents with cancer had a similar mean PNIQ score to those with inflammatory bowel disease (mean 10.82, SD 6.00 versus 11.04, SD 5.91). Those with surgical complications reported a poorer QoL (effect size 3.03, CI 0.642 to 5.418) and those with severe gastro-intestinal dysmotility reported a better QoL (effect size -3.03, CI -5.593 to -0.468), compared to other disease states. CONCLUSIONS: This large cohort study of quality of life in chronic intestinal failure demonstrates that HPN impacts individuals differently depending on their underlying disease. Furthermore, since the number of HPN infusions required per week is inversely related to an individual's needs-based quality of life, therapies that reduce PN burden should lead to an improvement in QoL.
Authors: Maja Kopczynska; Gordon Carlson; Antje Teubner; Arun Abraham; Michael Taylor; Sorrel T Burden; Christian L Hvas; Peter Jepsen; Simon Lal Journal: Nutrients Date: 2022-03-30 Impact factor: 5.717
Authors: Anne Marie Sowerbutts; Simon Lal; Jana Sremanakova; Andrew R Clamp; Gordon C Jayson; Antje Teubner; Lisa Hardy; Chris Todd; Anne-Marie Raftery; Eileen Sutton; Robert D Morgan; Alexander J Vickers; Sorrel Burden Journal: BMC Palliat Care Date: 2019-12-29 Impact factor: 3.234
Authors: Sjoerd C J Nagelkerke; Hedy A van Oers; Lotte Haverman; Lotte E Vlug; Barbara A E de Koning; Marc A Benninga; Merit M Tabbers Journal: J Pediatr Gastroenterol Nutr Date: 2022-01-01 Impact factor: 3.288